Chamber and committees

I will conclude my questions by expanding on the collection of data. I will put the question to Claire Jones first. What ability do you have to share and collect data—not only from around the UK, but internationally, given that this is a global pandemic?

We are trying to get to a position where we are as efficient as we possibly can be in the diagnosis and treatment of long Covid. Presumably, the more data that we can pull from the global population, the more that would aid you in that.

I ask Claire Jones the same question. Perhaps you can give us your experience from Wales.

I will expand the discussion to Dr Strain. From a BMA perspective, with regard to data collection and deployment, where can we learn from, and where could we improve the system?

Dr Strain, do we have an IT system that is capable of pulling that data in and usefully using it to develop treatments and diagnosis?

Good morning, panel. Thank you for coming and sharing your experiences.

When we speak to long Covid sufferers, the theme that comes out is a long journey to get to a diagnosis and then to get through treatment. The diversity of symptoms for long Covid seems to require a process of elimination. They get electrocardiograms, MRIs and blood tests. All the other conditions that put the NHS under pressure have not gone away.

It strikes me that one of the keys to streamlining and making efficient the diagnosis and treatment of long Covid is how we gather and use data. Are we gathering data? Do we have an information technology system that allows the deployment of that data?

I am looking at your responses, Dr Heightman, so I will start with you.

Good morning to the witnesses. I have been listening with great interest to what they have said.

I have a big beef about how we collect and utilise health data and how we deploy that in an information technology system that is not fit for purpose. I used to say that long before the arrival of long Covid. It worries me that, in the NHS system, which is under great pressure—it was under pressure before Covid and is under greater pressure now—access to health services varies greatly across the country. That being the case, how can we be sure that the data that we gather reflects what is really happening in the system? If people cannot see a GP or get to secondary services, or if the GP cannot find a way to refer, how can we be sure that the data that we collect around Covid—and, therefore, how we treat Covid—is accurate? I come first to Jane-Claire Judson.

I will stop there.

Dr Shackles, can you broaden that out from a GP perspective? As a member of the Health and Sport Committee in the last parliamentary session, I remember that nearly everyone who came before us said, “We need our GPs to learn about this condition,” or “Education is needed on that condition.” It seems to me that long Covid is just being added to the list of things that we are asking our GPs to learn about, and you have already alluded to the fact that, at the moment, learning time is not being given to them for that.

I have to say that I take issue with the suggestion that the committee has not taken evidence from long Covid sufferers; I think that we have done so, and a consistent message that has come out is that a lot of long Covid sufferers have had to pay for private treatment, because they have been unable to access NHS services in order to get a long Covid diagnosis. How can your members gather this data if, first and foremost, they are struggling to access the education that would allow them to make such a diagnosis?

Finally, I want to expand this discussion with a question for Dr Taylor. You have gathered data and information from around the world, Dr Taylor, but it concerns me that you, personally, have taken it upon yourself to do that. Is there even a system in the NHS that can share data across health boards, let alone gather data from around the world? Interestingly enough, I read in an article that Australia is having exactly the same problems as we are with data not being shared enough. What is the solution?